Each night Warrawong’s Anneliese Alarcon plugs herself up to a machine for six hours to pump a day’s worth of ‘’meals’’ through her gastric nasal tube.
The liquid sustenance goes straight to the 37-year-old’s small intestine, bypassing her stomach which is paralysed due to a rare condition called gastroparesis.
It’s hard to sleep, but the mother-of-two would prefer to go through the process at night so she can spend quality time with her two young kids through the day.
For fellow gastroparesis sufferer, Emma Seymour, of Oak Flats, there’s little reprieve from the process as she needs to be hooked up to the machine 24/7, causing discomfort and, at times, embarrassment.
Meantime Sanctuary Point’s Kristi Kaspars – also a ‘’tubie’’ – made 26 trips to the emergency department last year as specialists struggled to keep her condition under control.
Other Illawarra women have taken even more drastic measures to stop the constant nausea and vomiting the condition causes.
Bridget Wall, just 19, from Kiama has had a permanent tube inserted into her abdomen, with a tube into her stomach for draining and a tube into her small intestine for feeding. Another Kiama woman, Jodie Pilgrim, had her large intestine removed this week after complications from the condition.
Meantime Towradgi’s Kerryn Barnett is one of only 22 Australians who’s had a gastric pacemaker inserted to stimulate her stomach to contract and move food through.
For many years, these women have suffered alone but after Mrs Barnett’s quest to get her health insurer to cover the cost of the pacemaker was publicised in the Mercury, they connected.
A group of eight of them have recently created the Illawarra gastroparesis support group, and in a few weeks they’re getting together to produce a video to raise awareness of the condition.
They want to help others, and they also want to attract more government support to fund research – or at least subsidise the costs associated with the illness.
For being a tubie can be an expensive process with equipment, feeds and medication costing hundreds a month; while other surgical interventions can cost thousands.
‘’Our hope with this project is that we will increase awareness of this rare disease and that the government may assist us with the costs of managing the day-to-day symptoms,’’ Mrs Barnett said.
‘’Many of the medications we require are not on the PBS (Pharmaceutical Benefits Scheme) – some cost $40 for 10 tablets and we may require three to four of these per day. And some of us take up to 20 different medications per day.’’
Mrs Barnett also hopes that health insurers will revise their policies, to provide better coverage for members with gastroparesis.
For instance, while Bupa covered the 39-year-old’s hospital stay and theatre time, she was forced to get a loan to pay the $33,000 cost of the pacemaker and the leads to connect it to her stomach.
And while the surgery in April 2015 has been a success – she still needs to take several medications each day – some covered under the PBS, many not.
Meanwhile Mrs Seymour estimates that, with tubes, feeds and medication, she is forking out around $400 a month.
According to a spokeswoman for the Federal Department of Health there are a range of services available on the Medicare Benefits Schedule (MBS) to gastroenterologists for the diagnosis and treatment of gastroparesis. These may include consultations, pathology and diagnostic imaging and ‘’possibly’’ surgical services.
‘’If a specific medical service is not covered under the MBS, applications can be made to the Medical Services Advisory Committee (MSAC) for it to consider whether the service warrants public funding.’’
The spokeswoman said there were a couple of drugs (Domperidone and Metoclopramide) listed on the PBS, which treated diabetic gastroparesis.
However, she said while some gastroparesis sufferers were prescribed the anti-nausea drug Ondansetron, it was not listed on the PBS for the condition. It was however listed on the PBS for cancer for nausea and vomiting related to chemotherapy and radiotherapy.
‘’It’s frustrating because no one recognises gastroparesis,’’ Mrs Alarcon said. ‘’It’s not like breast cancer or multiple sclerosis for instance – where you can go online and read about it, and get support and services, and donate to research.
‘’I’m also looking into getting a gastric pacemaker – but while health funds cover cardiac pacemakers, they don’t cover these.
‘’Most people with gastroparesis have to give up work partially or completely, so they’re mostly doing it tough already without the added costs.’’
There are an estimated 135,000 gastroparesis sufferers in Australia, many still undiagnosed.
The motility disorder basically slows or stops the movement of food from the stomach to the small intestine – causing nausea and vomiting, and associated weight loss, fatigue and malnutrition.
The condition is often caused when the vagus nerve – which controls the movement of muscles in the stomach – is damaged.
This can be caused by prolonged exposure to high levels of blood glucose, so many gastroparesis sufferers are also diabetic.
It can also occur during gastric surgery or may be linked to an acute viral infection. In Ms Wall’s case, it came on after she contracted swine flu at the age of 12.
For most however, the cause cannot be identified. And it cannot be cured, only treated.
‘’We need to find a cure,’’ Mrs Alarcon said. ‘’I’ve spent four days straight vomiting, I’ve been hospitalised countless times; it has a massive effect on your life, on your family’s lives. It’s a living nightmare.’’
Mrs Alarcon’s Facebook site, The Tube Fed Mum, has reached sufferers across the globe. The group’s upcoming video – to be released at the end of February – will also be posted on this site and on YouTube.
‘’We want everyone to know what gastroparesis is,’’ she said.